International Conference on Autism in Ireland

Posted by Simon Wallace, Autism Speaks director of scientific development for Europe

A fine mist was rolling in off the Atlantic as we made our way to the opening session of last week’s International Conference on Autism at the National University of Ireland, in Galway. Autism Speaks partnered with the university and the American Ireland Fund to put together a program that attracted not only researchers and clinicians, but also parents and policy makers. In all, more than 600 delegates attended this productive conference in the beautiful town of Galway, on Ireland’s west coast. The meeting was very much the brainchild of Autism Speaks board member Adrian Jones, a native of Ireland who now works for Goldman Sachs, in New York City. (You can view the full program here.)

Parents and educators joined researchers and physicians.

We received a warm welcome from National University of Ireland President James Browne before spending two days hearing from international experts on advances in clinical practice, early intervention therapies and educational supports. As hoped, the presentations spanned the range of evidence-based practices in the United States and Europe. This included important information coming out of our own Autism Treatment Network (ATN) and other Autism Speaks programs and initiatives.

The morning presenters included Helen McConachie, of Newcastle University, who spoke about early intervention. Gillian Baird, a pediatrician from Guy’s Hospital in London, spoke as the chair of a committee that developed the United Kingdom’s clinical guidelines on referral and diagnosis of children and teenagers with autism. Also presenting was Cathy Lord, of Columbia University. Lord has been centrally involved in the upcoming revision of the Diagnostic and Statistical Manual (DSM), which physicians use to diagnose autism and related disorders. She explained that there would no longer be three separate diagnoses of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). In the future, these will all be included under the unifying diagnosis of autism spectrum disorder (ASD). This is to avoid the persistent inconsistencies in how physicians assign children to one of the three subtypes.

Afternoon workshops included a presentation by our own Vice President for Translational Medicine Rob Ring, who spoke about the latest evidence for clinical use of medications for patients with autism. ATN Program Director Nancy Jones presented on the network’s ongoing work developing best practices and clinical guidelines.

Connie Kasari, of the University of California-Los Angeles, presented the second day’s keynote address, which focused on the large numbers of children with autism who receive services in schools—and the need for more research on the effectiveness of these services. Among the interesting research findings that Kasari described was the insight that young children with autism are more “socially connected” than we previously assumed. Around 20 percent, she explained, enjoy close friendships. Intriguingly, Kasari has observed that this social connectedness drops when schoolchildren with autism go out for recess.

Minister Reilly speaks with reporters.

For me, the highlight of the second day was a presentation by Jamie Reilly, who spoke of the challenges growing up with autism and how he went on to graduate from Ireland’s top-rated university and is now studying for a master’s degree in Belfast. Reilly spoke of the importance of his family—in particular how his “mum” taught him strategies for overcoming many of the difficulties he encountered. He also described how he occasionally continued to make mistakes—for example, saying “good riddance” rather than “goodbye” to one of his teachers at the end of a lesson. With his fantastic sense of humor, Reilly kept us laughing throughout his presentation.

We also heard from Jamie Reilly’s father—James Reilly, a physician and Ireland’s current minister of health. Minister Reilly’s emotional presentation spoke of his pride in his son’s achievements and respect for his wife’s determined efforts to ensure that Jamie had the opportunities he needed. The minister spoke of the need to provide the best evidence-based approaches to help children with autism reach their full potential. He also announced his ministry’s commitment to provide an additional $4 million over the next three years to improve diagnostic and early intervention services. Minister Reilly will also be creating a senior post to coordinate autism-related activities across Ireland’s departments of health and education.

As we wrapped up this fantastic conference, many delegates told us that this was the largest conference ever held at the university and one that stood out in the sheer number of stakeholders from the autism community. We left for our homes and workplaces with the feeling that we are on the “front foot” for the New Year, thanks to what we learned about the latest research and guidelines on evidence-based practices.

I have seen the program of the conference. I have not seen mentioned the gastrointestinal, metabolic, biochemical , toxicological, immune and autoimmune, viral, bacterial, fungal and parasitic problems my son had/has- that were the key to his present situation of high quality of life. It is the same as always, early diagnosis-ABA/others- early intervention- education ONLY..unfortunately…It seem that the gap between what is considered useful and what is truly useful is being done more and more and more profound, every year….

I think it is terrific that AS is helping Ireland deal w/ ASD. By all accounts autism is a serious problem there and resources are few. Hopefully, this conference will spur the development of schools and treatment centers. Ireland is part of the EU and the EU has stated a strong commitment to serving those w/ disabilities. Let’s hope they follow through.

Like ML I agree that early intervention is important but there are too many psychologists and neurologists at these conferences and not enough clinical doctors and specialists. We have to realize that the best EI in the world is useless if a child has underlying, untreated medical problems. AS needs to make a bigger effort to including GIs and autoimmune clinicians at these intl conferences.

Hear !Hear!
We need more treatment and focused supports. We need more research into quality of daily life isssues , an infrastructure options that support the maturing child and systems/ services discussed , developed and implemented for the older child.

You are right issues that affect the health and daily practical life of our children wtih ASD. . Life after ten years of age will be a long span of 40 to 60 years for most.

i am happy to see this is becoming a global interest. my daughter being 22 now has had gastrointestinal problems but was never addressed. they would prescribe laxative things but not look into why. i have finally got here where she needs to be with this on my own. i am very hopeful that with the power of our voices we can make a difference.